National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, December 2013

• M. Ellenbogen  |  12-03-2013

Attached is my speech from yesterday for the public record. It was nice to see you all yesterday and I really liked the accommodations. For me it made it so much better to be in the middle so I could get a better view and clarity of who was speaking. Thanks so much for you offer to read my next speech. I wish you a very safe and wonderful holiday season.

Jane Tilly made some comments about ACL and ADSSP programs. It sounds like some great things are starting to happen. I just hope they are involving people with YOAD in the creation of these programs.

During my time as an advocate I have made contact with people all over the world, and I have come to realize that there are some great and pioneering programs happening out there in the dementia arena. Some are based on scientific research, and some are not but they all have great outcomes. Unfortunately these programs go unnoticed by the majority of people. I have seen famous institutions try to invent a program from scratch, unaware that the same program had been established in the same area some time-ago. This wastes time, money and vital resources that can be better spent on other ventures.

A good example comes from a well-known scientist based on the west coast with whom I spoke with a few weeks ago. We were discussing a new trial he was considering perusing, a trial that he assumed was the first of its kind. However, I had previously spoken to a person on the east coast who had already started a similar program. Knowing that the program had already been established elsewhere saved the scientist time and money. This is a clear reason why it is vital that information be shared.

We must develop a way of sharing the best ideas from around the world, and at the same time educate people. An ideal solution would be to have an international information portal where people can share ideas, and upload information about programs that have been created. The site will have an administrator whose job it is to review the information provided.

The portal should be broken down into categories including location, type of program e.g. drug trial or meeting and who it suits best. Ideally there will have a top three recommendations. An already-existing government site would be an ideal place for this portal to be located.

At our last meeting I mentioned the need for dementia-friendly communities and businesses, and that I was in talks with a local hospital in my area. Well I am happy to announce that after two long years the hospital has now not only decided to create a dementia-friendly hospital, they have also decided to educate and engage the community so we can build a dementia-friendly community.

This vision has been shared with the committee and I hope that this program can be used as a model that can be rolled out across the US. I hope to put Doylestown PA on the map as being a true dementia-friendly community, because until we have a cure we must create environments that enable and encourage those living with dementia to live full and productive lives within our communities.

I believe the best ideas come from those directly impacted by dementia since they know what it's like to deal with this disease. So many like me can be true assets if given the opportunity to be included in the process. The sad fact is that many institutions and programs are not willing to include us which I cannot understand. How can you resolve the issues that affect us if you do not completely understand them all? Companies, organizations, health providers and the public need to be encouraged to use us as a resource.

By taking these steps we will start to eradicate the stigma that goes hand in hand with this disease.

Driving laws need to be changed to take into account those who are no longer able to operate a vehicle safely, but not to impact those, like me, who are still able to drive. First responders need educating, and a system needs to be created that will help identify a dementia patient.

In my opinion awareness continues to be the biggest problem for those impacted by dementia. The face behind the disease must change if we are going to get the public engaged. We must show that Alzheimer's is a disease that affects all ages and not just associated with getting older. Education will lead to many other benefits.

While it is very important that people know that there is no cure; that those affected will die, there should be no excuse for not encouraging those who have the diagnosis to live life to the fullest. Having a diagnosis of dementia does not mean we lose our willingness to live, or motivation to contribute to society. We need opportunities to engage in meaningful activities throughout the course of the disease.

We should have the right to end our life in a dignified way. While this is still a taboo subject we must talk about these issues.

I hope you have read my vision. I welcome the opportunity to speak with you further and go into more details. My idea highlights the problems and points to a simple solution, but it's not the only solution. I leave that up to those who understand the system better then I. I just took a stab at it.

I would like to thank the committee for electing a member who has dementia. This is an important role, with a great deal of responsibility being placed on the elected member to represent us in an adequate manner. As a person with Alzheimer's who serves on the PA State committee I know how challenging it is to be a part of the process, and to communicate with the people I serve with because of my disease. We as representatives and advocates need to be effective, and as the disease progresses and renders us ineffective we need to have the strength and fortitude to step down, and allow another with the disease to take the reins. Mr. Moore, I wish you the best of luck, we are all counting on you. Please feel free to reach out to me and your friends living with dementia.

Good Luck Don and I will miss you!